Another conversation with Prof. Bikels today

I spoke with Prof. Bikels again today. I called to let him know that I'll need him to get me a timely/prompt appointment with the orthopedic surgeon here in Soroka for the consult. He said he'd help take care of it. Then I asked for a few more minutes of his time for a few questions, and he agreed.

I asked what sort of PVNS I have, there are two types. I have "diffuse", the harder one to treat.
I asked about the research I saw that says that an open surgery synovectomy (not arthroscopic) is the most successful way to treat it, as opposed to arthroscopic which can sometimes leave some of the bad stuff in, and has a much higher recurrence rate. Prof. Bikels answered this way:

He does not want to do open surgery on me. True, he said, it would be the treatment of choice. I am not a candidate for the treatment of choice; I am too high risk. He said that there is danger for my life if we were to go that route, because of the systemic strep A. He also said that an open synovectomy requires dislocating the hip to get out the synovial stuff and the tumor, then putting it back together. In my case, because of the damage to my hip with the scar tissue, adhesions, together with the PVNS damage, he said I could very well wind up completely crippled, that my hip would not recover.

I then asked him about the high recurrence rate that can be expected with arthroscopic surgery, and he basically said let's just wait and see what this consult doctor says.

I then asked about pain meds, and told him that I feel the disease is progressing. All the meds he suggested I have already tried, and they didn't do anything for the hip pain. He went through a list, and I told him about each one; didn't work, threw up from that one, allergic to that, didn't work. He got to one I hadn't seen or heard of before "Celcox" (Dad, it's made by Pfizer- heard of it?), so I'll ask my GP for a prescription for it. If there aren't going to be any pain relievers that can help me with this, I'll have to lower the "normal" bar to extraordinarily low. If normal means this much pain every day, ...Gd, I can't even think of the end of that sentence.

I forgot to ask about the radiation therapy and the Toronto study, can you believe it? I was significantly thrown by the other stuff, and I felt that he needed to end the call, so I felt pressure and forgot what else I wanted to ask. Anyway, I can ask that after the orthopedic surgeon consult, when ever that will be.

All this stuff takes **soooo** long. I am going a little crazy about it, but I have to learn to accept the process.

I called Robert after my talk with Bikels, and cried a bit. It feels like my options for fixing this disease are narrower than I thought. Again, I see myself with pain forever. How can it be? You know that is a hypothetical question. What has happened to me in two short years?
Really, how can it be?